Powering The Vision
If we allow ourselves to dream of a better health care system — one that permits us to feel connected, supported, and in control of our own health destiny — two words come to mind: information and planning.
The more information we have about our own health history and genetic profile, the smarter we can be about making health decisions and planning our health future. This requires a constantly available “record” of our changing health status. But if you switch doctors or go to a hospital for surgery, you’ll find that our nation’s health records are not even close to this ideal. They are splintered and poorly organized at best.
To their credit, doctors and hospitals have been trying to create a coordinated system of electronic records – but it falls far short of what we need. The real key to our health information future is a concept called a “Lifespan Planning Record.” This computer-based and integrated model would provide a holistic view of your health – stretching all the way back to your ancestors and projecting far forward into your future – so you will know what you can anticipate as your body ages. It helps define health as much more than the absence of illness. It’s about life fulfillment.
With Lifespan Planning, we can start to concentrate on preventive activities in health – which is just about all that the experts say must happen if we are to fix our broken health care system. It will also make our health care system safer because the information we use will be more reliable. Don Detmer, President of the American Medical Informatics Association, said it best: “Significant improvements in health care safety and quality will not be achieved for Americans without robust, secure electronic health records within a national health information infrastructure.”1
Making It Happen
Implementing Lifespan Planning Records won’t be easy. As you can imagine, there are large technological and logistical hurdles. But we can at least start to sort out what some of the issues are. Let’s have a look.
The first thing you should know is that some of health care’s most important players are spending significant time on the question of record-keeping — from the American Medical Informatics Association to The Robert Wood Johnson Foundation to the Agency for Healthcare Research and Quality.2
Much of the challenge for groups like these is in determining how to build a system around what is, essentially, a moving target. Which parts of the plan should be derived from technology of the present, technology of the future, and technology from the distant future?
To adequately address those questions, let’s look at the trends. First, longer life spans are moving us from three generation families to four and five generation families – with more complicated health management needs.3 Second, the health consumer movement is in full swing, with consumers carving out a more empowered role and demanding reform.4 And third, information technology is advancing to provide new linkages between patient and caregiver and mind-boggling possibilities for data storage and exchange.5
As these trends intersect, they are rapidly changing the very drawing board that is being used to plan for a new national health record system. Over the last decade, the discussion about health care records has focused on electronic medical records — or EMRs — and aspired to improve accuracy and efficiency by converting paper-based systems used by doctors, nurses and hospitals to electronic formats.6 That’s a worthy goal. But as leaders diligently began this conversion, the environment began to shift under foot – thanks largely to our three intersecting trends.
In fact, by 2005 it had become quite clear to many leaders in the field that “The Record” properly resided with the patient from whom health data emerged, and that the data that flowed through the hands of hospitals, doctors and nurses was only a part of the overall picture. Thus the concept of a “Personal Health Record” is gradually subsuming the vision of an Electronic Medical Record.7
This is a good development. The Personal Health Record combines data, knowledge and software tools, which help patients become participants in their health care. But if we are truly to anticipate where health care trends are taking us, even this is not enough.
An Integrated Long-Term Plan
It is now clear that in a truly preventive system, “health” is not a collection of late-stage, reactive interventions. That kind of thinking will soon be a relic of the past.8 Rather, health should be defined as a life fully lived – hopeful, productive, fulfilling, rewarding and manageable. The determinants of such a life begin before birth, embedded in the healthful behaviors of ones’ future parents, and they extend beyond death to ones’ survivors.
Considering this broader view of health, the right concept for our health record system should be a Lifespan Planning Record — or LPR. The LPR for a single individual born today could extend out at least 120 years. It would include all of the baseline medical information needed by patients, and much more. It would consider economic, social, educational, and spiritual goals and milestones as well as medical and scientific objectives.
Born today, the newborn child’s plan would already be inhabited with a great deal of data. Some reasonable compilation of the records of parents, grandparents and siblings would be represented. Future diagnostic and preventive therapeutic measures, based on familial information, would be flagged on the timeline. Print, video and graphic information from other accessible intelligence databases would be seamlessly interwoven for easy use by the people caring for each other and this new global citizen.
As time passes, this “Living Record” would flexibly grow and adjust to assist informed decision making, preventive behavior and full and complete human development.9 Where will the knowledge come from? Patients, obviously, will need to contribute to the personal side of the record. On the health and science side it will emerge from three electronic data sources: the Clinical Research Data space, the Continuing Professional Development data space, and the Continuing Consumer Education data space. These data sources will desegregate and converge to allow integrated use of the information they contain, by the people, the people caring for the people, and investigators searching for new solutions to today’s unresolved problems.10
Obviously, many issues will need to be sorted out – not the least of which are confidentiality, patient privacy, and control over records. But the bottom line is that as quickly as the Electronic Medical Record is being subsumed by the Personal Health Record, the Personal Health Record is now being subsumed by the need for a Lifespan Planning Record – because that’s the best way to move us toward a preventive care system.
1.Detmer DE. “Getting to a ‘Smarter’ Health Information System: Legislative Proposals to Promote the Adoption of Electronic Health Records (EHRs).” Testimony Before the Committee on Energy and Commerce, Subcommittee on Health. March 16, 2006.
2.Expert Panel. “Personal Health Records and Electronic Health Records: Navigating the Intersection.” Bethesda, Maryland. September 28-29, 2006.
3.Alliance for Aging Research. “Medical Never-Never Land: Ten Reasons Why America Is Not Ready For the Coming Age Boom.” February 2002. Available at:http://www.agingresearch.org/brochures/nevernever/welcome.html.
4.Nash D, Manfredi MP, Bozarth B, Howell S. Connecting with the New Health Care Consumer. McGraw-Hill Publishing Co; 1st edition (January 15, 2000). New York.
5.Dishman E. Inventing Wireless Systems for Aging in Place. Computer. 2004;37:31-34.
6.Hillestad R. Can Electronic Medical Record Systems Transform Health Care? Health Affairs. 2005;24”1103-1117.
7.Tang PC, Ash JS, Bates DW, Overage JM, Sands DZ. Personal Health Records: Definitions, Benefits, and Strategies for Overcoming Barriers to Adoption. J Am Med Inform Assoc. 2006;13:121-126.
8. Magee M. Health Politics: Power, Populism and Health. Spencer Books. 2005. New York. http://spencerbooks.org
9. Magee M. The Re-Emergence of Home Health Care: A Holistic Response to Aging and Consumer Empowerment in Medicine of the Person. John Cox. Alastair V Campbell and Bill Fulford (eds). Jessica Kingsley Publishers, UK.
10. Magee M. “Turning Silos to Vapor: How the New Health Populism Will Transform Medicine as We Know It.” Speech to the American Medical Association Presidents’ Forum. March 12, 2006. Washington DC.